TL/DR – It doesn’t hurt you to use non-gender binary language, it does hurt those who identify as non-binary if you don’t, so use it.
I am a middle-aged cisgender feminist who finds herself struggling with applying non-binary gender terminology. Many of my friends children (to clarify, those I know of are aged 11 and above) have come out as gender non-binary, and some are choosing to use non-specific terminology and/or changing their names to ones most often considered to be of the sex they were not assigned at birth or gender neutral.
Many of my friends are struggling with this, and I am embarrassed and ashamed to note I struggle too. I’m embarrassed because I have stated more than once over many years that it would be brilliant if we no longer had to use gender-based language and terminology to refer to people as this would be a massive step towards resolving inherent gender inequality which is perpetuated in part by such language. I’m ashamed because I know hurt is caused when I get it wrong and I desperately don’t want that to happen.
The necessity of gender being defined and fixed is ingrained into our language and our political, social, economic and all other systems through which we administrate and run our countries. Some other countries and cultures do have a third-gender possibility (Hijra in India for example, or Two-Spirit people for several of the tribes indigenous to the Americas), others genderise inanimate objects to the actual names objects are given (school French, I’m looking at you with all your ‘la table’, ‘le SomethingMasculineBecauseIHaven’tDoneFrench in 30-odd years etc.).
The difficulties I am finding are entirely due to the deeply ingrained use of language I have lived with all my life (as has everyone else in their respective cultures). I am very much pro-neutral language and advocate for it, yet still I find it a problem to actually use it. That does not mean it is not important, even vital, to do so if we want a non-sexist society.
Gender is a social construct. Therefore the means to perpetuate the construct are also a social construct. At the end of the equation then is the possibility to deconstruct, and that takes time, practice, patience and apologies for getting it wrong because you, and I, will. The main three problems I have found are:
- I have known the person from prior to utilising their chosen terminology.
It just takes practice, and apologies for when I get it wrong. I will trust that person to understand my mistakes and hopefully forgive them, in the same way that they have trusted me with their truth. That trust is a privilege and I will not abuse it.
- Their parent/guardian/responsible adult doesn’t support them and it is they who are my friend/family
It’s tough to try and support both but ultimately it is the parent/guardian/RA who has the problem, not the child. I try to guide the adult to acceptance (not tolerance) and support the youngling in their move forward into their lives.
- They are presenting outwardly as how I would consider at first initial glance as one particular gender.
Having boobs is a particular problem for me in utilising non-gender specific pronouns etc., or wearing what are considered ‘female’ clothing. I do not have the same problem with what are presumed to be male forms of clothing as it is ‘acceptable’ in my society for women to wear male-gendered clothing, although a shaved head and seeing only from behind has caused some embarrassing mishaps. My mouth spasms into a knee-jerk automatic incorrect use of he/she. I just apologise and say I’ll do better, and hope I haven’t hurt that person although I know I have to accept I may have. I need to maintain my awareness that this is all about my social conditioning, nothing else, and that that person will have been subjected to the same conditioning.
All I can do is try, try, try again and do better, even if it’s only a little better, each time.
Many times I’ve heard it stated that “it’s a phase” the non-binary identifying youngling is going through. So what if it is? That doesn’t mean you ignore or trample over the expressed wish of the youngling. They may or may not change their mind (although you should note the majority who come out at a young age do not go back in, and if they do it is that that is the phase because of the bigotry they faced when coming out). If it helps, think of it this way; if your child had expressed a wish to play a sport or join a social club, that also may be a phase, but it wouldn’t stop you supporting them in that endeavour. It doesn’t hurt you to accept what they say and talk and act in the way they choose, but it will hurt them if you don’t.
We were conditioned into binary gender definitions and language, so we can definitely condition ourselves out of it. It’s not universal nor is it temporally fixed. It is a social construct. I think we should each strive to the best of our abilities to improve the world as best we can for future generations, and to me, that does not include bigotry in any form.
Maybe what we are seeing now is that breakdown of gender constructs, necessitating more self-identifying categories in order to best fit the person choosing to apply them to themselves. We are no longer being boxed in by others binding us into broad definitions and then regulating and socialising us into discrimination based on those imposed definitions. The end of that logical road can only be the end of all forms of bigotry, and isn’t that what we all should want anyway?
Remember also, gender does not equal sexuality. Don’t confuse the two.
It’s LGBTQPIA+ month in the UK in February 2020 – if you have any confusion and/or want to know more, avail yourself of the myriad opportunities that will shortly be coming your way! This is a fantastic start for parents, educators and youth: https://lgbthistorymonth.org.uk/
TL/DR – It doesn’t hurt you to use non-gender binary language, it does hurt those who identify as non-binary if you don’t, so use it.
I will be voting for the Labour Party and I hope that you will be too, although for some it will not be an option as the seats you live in are adamantly not going to go that way! I’m guessing it will be Lib Dem or Green, possibly an Independent, who will be your only viable choice. Until we have proportional representation, you are right.
However, if you are in a marginal seat, or if you do have a viable Labour Party candidate, please vote Labour and encourage as many people as you can to do so. I’ve read the costed manifesto and it makes sense and added up. However, I have noticed some obfuscation, misunderstanding and ignorance being bandied about in the mainstream media (“MSM” – in print and online), so here goes my attempt at clearing matters up. Please bear in mind that approximately 75% of stories about Jeremy Corbyn and the Labour Party are essentially untrue.
This is a long blog, so I’ve put links to all party websites at the end of this blog post, so if it is TL/DR, skip to that, or go to the headers you are interested in most.
The NHS
Labour pledges to not only retain the NHS but to invest in it; at the moment PFIs (private finance initiatives) leaves NHS Foundation Trusts in debt to private investment companies and has led to bankruptcies and consequent loss of services. Further, much of the work that used to be undertaken within the NHS such as cleaning and maintenance is now outsourced to private companies. Bringing this back under NHS purview makes it no longer profit-based and dependent on paying agency fees, and those workers will become NHS employees instead of privately-employed agency workers.
Even the MSM has called the Conservatives on their creative maths in their calculations of what will be achieved if they are elected; 50,000 promised nurses turned out to be 31,000 hoped for over 10 years (the election is to govern for a maximum of five years), plus a pinky-swear to retain as many as 19,000 nurses already working in the NHS, many of whom are immigrants and who are leaving because of the toxic racism and ethnicism which has arisen since Brexit. The 40 new hospitals turned out to be funding for 6 by 2025 and a hope for pinky-swear for the rest. It’s the Brexit bus all over again.
Moreover, over the last two years six rounds of talks have been held by the Conservatives with the USA about sales of parts of the NHS. The NHS is not safe with the Conservatives. The United States has the worst healthcare system in the developed world. That terrifies me and it should terrify you.
Anti-Semitism/Anti-Racism
There is racism and antisemitism in every system that exists in the UK and to deny that is to deny the lived experience of a large amount of people and the quantifiable evidence collected and collated over many, many years. Those of us with the privilege of living beyond the boundaries of judgement by our skin colour or perceived religion/ethnicity can never know what it is like to be judged overtly and covertly. If we have discriminated against identities ourselves (I am a disabled woman) we may be able to empathise but we cannot know.
There have been incidences of horrific antisemitism in the Labour Party, and in the Conservative Party too lest we forget the disgraceful pieces in the Daily Mail supported by the Conservatives against Ed Milliband’s father.
It is not acceptable no matter where it comes from, but don’t let your perceptions led by MSM make your decision. Speak to and search out the voices of those who experience the discrimination in all parties, and let them lead the way.
Sadly and shamefully it is unlikely that any of the parties are free from discrimination. What is essential is what they are doing about it, and the Chakrabarti Report into the problem by Labour was a great start, and that is what it was, a start.
I don’t ask that anti-semitism and racism are ignored, absolutely not. I ask that all voters weigh up each party in what it is doing to combat them, put them against the policies in place to fight discrimination in all areas of society, and vote for the one which is fighting hardest and proving most effective, as a whole. I believe that is the Labour Party. Based on their record it is certainly not the Conservative Party.
Equality Policies
There are many groups of people who are discriminated against due to their perceived and acknowledged identity; for me it’s being a woman (albeit with cisgender privilege) and disabled, and I have written about the Conservative’s recent shameful record in disability issues here. Pick the party that identifies the problems and seeks to find effective, long-term solutions, and who work with and are led by those who actually experience the discrimination.
It is absolutely right that party members fight within for reform and equality as well as without. A general election is about what policy promises are made and the party’s history in keeping those promises within the social, economic, political and environmental spheres outside the party itself.
The record for 2010-2015 (Conservative/Lib Dem coalition, and Conservative/DUP teaming) policies can be found here. Compare to the manifesto promises, compare to Labour’s record, and then decide.
Income Taxation
@mona_chalabi, twitter, source HMRC/Labour Party
Income tax is the hot topic for the majority of us. However, many seem to misunderstand how tax works.
Under £12,500 there is no tax to be paid on your collective income (money earned through paid work).
Between £12,500 and £50,000 you are taxed at a rate of 20% – that means on the amount that is left when you subtract £12,500 from £50,000. The first £12,500 remains untaxed.
From £50,000 to £100,000 you would be taxed at a rate of 40%. Again, that is on the amount once £50,000 is subtracted from £100,000. The rate for £12,500 and below remains 0% and the rate for up to £50,000 remains 20%.
Labour is proposing to up the tax on £80,000 and above. That means upping the tax paid on any amount earned above £80,000, everything else remains the same, including on that amount between £50,000 and £80,000 under the new proposal.
At the moment those earning £150,000 or above have a further tax rate of 45%. Bear in mind that is only applied on anything from £150,000 upwards, and below that the tax rate stays the same. Labour wants to lower the threshold to £80,000 for the 45% tax rate, and would add a 50% tax rate for £125,000 and above.
That does not mean that rate would apply to all income earned, only on the amount that a person earns that is above the limit. That effects, according to the Institute of Fiscal Studies, only the top 3% of income tax earners. That means they may have to budget on luxury goods, maybe one less holiday a year, or a bottle of wine less per month. But by raising more taxation that means more funding for education, the NHS, housing, everything people need to live, and that benefits everyone. How anyone can vote against that is beyond me!
Minimum Wage
The Labour Party wants to raise the minimum wage to a living wage of £10 per hour per person, for everyone, and hopefully stop people having to work two jobs per person, or having to receive benefit whilst in full-time work. This also recognises that all workers do the same job regardless of the age of the worker and will stop the discrimination against the younger worker. This will give people more money in their pocket to spend and will boost the economy, a model now recommended by 163 internationally respected economists and academics.
Social media posts have myriad complaints from people who state this will mean their employer will lay staff off, and will force those already employed to work longer hours to cover this. That is a problem with working for an exploitative employer – if they are not earning enough profit to pay such wages then they have a very poor business model and will probably fail at any rate. If they are earning sufficient profit and refuse to do so they then are exploiting their workforce. Both are reasons why Trade Unions were created. Neither are reasons to vote against the Labour Party but are very good reasons to vote for the Labour Party. Protect your worker’s rights and don’t allow yourself Party but are very to be exploited. It’s not just you who suffers, but your entire social circle and environment. Vote for the best collectively and you will benefit.
If you still vote against your rights, then you are voting to be exploited and paid insufficiently to meet living needs. Remember, you will still have the right to complain but you will be partially responsible for the problem.
Benefit System
This used to be known as Social Security and that is what it should be; a safety net there for all of us should we find ourselves in need at any point in our lives. Far too much has been reported in the MSM, claiming abuse of the system and implying it is a waste of taxpayer’s money (forgetting that even people on benefit pay tax). The last 9 years have seen horrific cuts particularly affecting the most vulnerable; families in poverty, disabled people and the elderly.
There is so much misinformation it’s very hard to know what is actually true. Here are four simple graphs which should help summarise the position:
DWP statistical summary of benefits 2019
How benefits have changed 1978-2017
You will note the huge increase in tax credit payments – that is benefit paid to people who are in work. That is the government propping up profitable businesses because they do not pay their staff sufficient wages.
where your tax goes
comparison – tax fraud and benefit fraud
Education
The Labour Party policy is very much based on equality. Education should be free for all from cradle to grave, allowing for greater social movement and learning opportunities. They will also reduce primary-school class sizes and reintroduce free school meals to all primary-school children. At present, teachers are reporting that children are coming to school starving, and that during school holidays many do not receive the midday meal as their families simply cannot afford it. This is shown in the massive increase of people applying to food banks. Some of those applying are in work, but are not paid sufficient wages to meet their family costs.
Those children who are undernourished have reduced concentration and their education suffers, having a massive effect on their ability to achieve and therefore affecting their future, denying their potential. As a society, we all lose the potential that each individual could gift to us.
Labour will also the charitable status of private schools who receive massive funds from private tuition, and from subsidies via government grants that state schools do not have access to.
There is also an intention to introduce 320,000 new apprenticeships in the first elected term (i.e. by 2024) to meet the worries of the business world that we have insufficiently skilled new workers entering the workforce upon leaving school. 80,000 of these apprenticeships will be in climate and environmental areas. By 2030 it is hoped this will be 860,000 new apprenticeships.
Legal Aid
It is every citizen’s right to have equal access to justice in this country. Unfortunately the swingeing cuts to the Legal Aid system over the last twenty years mean it is a lottery whether a person can access legal aid, and if you having civil legal problems as opposed to criminal legal problems, such as housing or family, then it is nigh on impossible to access the legal system.
Many people are seeking to represent themselves in court cases now, meaning Judges are left to explain the legal system in court which causes delays in listing cases in court diaries, which in turn are already massively overburdened due to court closures. For example, 50% of magistrates (criminal) courts have been closed since 2010, according to government figures. The criteria given to justify this is that people could access a court within one hour’s driving (not at rush hour). Those on legal aid are more likely to use public transport, and figures at the time stated this could take up to five hours.
We need legal aid and we need open courts, otherwise there is no equal access to justice. The Labour Party has addressed this in its full costed manifesto, pledging to fix and re-open courts and restoring legal aid for such things as benefits appeals, housing problems and family court issues.
Immigration
Unlike the scaremongering tactics of the MSM, at no point did the Labour Party state it was going to remove all immigration controls.
The recent and ongoing Windrush scandal has shown how the Conservative Party’s policy of 2014, brought in with the support of the Liberal Democrat Party, is based in racist attitudes, with people who have lived here for at least 50 years and often more, who came here as children, being told they have not right to reside and having their rights to work, to access health services and education removed. Labour will scrap the 2014 policy.
There will be increased rights for family reunions (those who already live here bringing their families to join them) and less restriction on workers coming to work in the UK, for example Nurses will be welcome and not barred by the minimum wage requirement to be implemented by the Conservative Party. However, immigration policy is very much tied into the Brexit negotiations and no firm promises can be made, merely promises of what they would wish to achieve.
Ultimately, Labour’s immigration policy is based on equality and human rights, seeking to meet skills and labour shortages in public services and employment.
Brexit
There are Leavers and Remainers in the Labour Party so, unlike all the other parties, Labour has determined a policy that will address the concerns of everyone and provides a pathway to a final resolution. Seems eminently sensible and completely within the accords of an equality-supporting political party.
I am a remainer but recognise that there are valid reasons for why one might wish to leave the EU. I also understand that the electorate was lied to by the Leave campaign (by the person standing for Prime Minister for the Conservatives) and a fresh referendum once a deal has been agreed should be made.
We need a vote based on the truth of what we would be voting for if we should leave the EU and this is what the Labour Party is proposing. Simply put:
- Negotiate a Withdrawal Agreement agreed by parliament and the EU.
- Put the deal to the public in a Final Say referendum.
If the public then vote to Brexit the deal will be entered into, and there will then start a long, arduous time of negotiating individual trade deals with single countries or smaller blocks. It will not be done overnight. But if all this is known and the majority of people still want to leave, I’ll swallow my bile and simmering rage/despair and deal with it. Leaving on a series of lies is wrong. Leaving on the basis of an informed, consenting decision is right.
I might not like it if we do end up leaving, but I don’t like the Conservatives either and yet still they ‘won’ the last election!
If you are forced into voting for another party other than Labour, I would ask you to ensure you hold your newly-elected MP to account on everything. Each decision made must be made for the best of everyone, not just small business, not just corporations, not just the “hardworking taxpayer” which should mean everyone as we ALL pay tax, even those on some form of benefit, through VAT, road tax, council tax and so on.
No policy is an entity on its own, and each has an effect on the other. For example, immigration policy greatly affects the efficacy of the NHS, which is 40,000 nurses short and haemorrhaging more every day as a vast number are immigrants.
It is very unlikely that anyone will agree entirely with any one party on all its policies. For me, the Labour Party by far has the majority of policies and ethics that I can stand behind, and that is why they get my vote.
Finally, please remember when voting you are voting on behalf of the entire country; each and every adult and child who resides in the UK. Make your vote count for everyone.
The main party websites can be found (in alphabetical order) here:
Alliance Party of Northern Ireland (NI): http://allianceparty.org/
Conservative Party (E,S,W): https://www.conservatives.com/
Democratic Unionist Party (NI): http://www.mydup.com/
Green Party (E,W): https://www.greenparty.org.uk/
Labour Party (E,S,W): http://www.labour.org.uk/
Liberal Democrat Party (E,S,W): http://www.libdems.org.uk/
Plaid Cymru (W): http://www.plaid.cymru/
Scottish Green Party (S): http://www.scottishgreens.org.uk/
Scottish National Party (S): http://www.snp.org/
Sinn Féin (NI): http://www.sinnfein.ie/
Social Democrat & Labour Party (NI): http://www.sdlp.ie
UKIP (E,S,W): http://www.ukip.org/
Ulster Unionist Party (NI): http://www.uup.org/
NI – Northern Ireland, E – England, S – Scotland, W – Wales
(originally written for Pilot TV News)
Who votes in an election? A glance at those in power would tend to indicate it is by vast majority white middle to upper class, educated to ‘A’ level or above standard; people who project the white cis-heteronormative* (see glossary below) able-bodied hegemony. There are exceptions, of course there are, and the fact that one can generally name those people who are the exceptions yet the average fades into mass unknown proves the point, in my opinion.
Each general election gets on the face of it a majority turnout of the voter population in the borough; in 2010 England had the highest turn-out with 65.5% and Northern Ireland the lowest, at 57.6%**. By-elections are roughly the same. This means that those who are elected to represent the borough do not get a majority vote, the votes cast being split amongst the candidates standing. The numbers tend to be lower for local elections, at approximately 36% for the most recent ones held.
The recent Scottish independence elections were very successful in attracting previous non-voters to the polls so there is clear interest in political process. The problem seems to me to be the lack of engagement, lack of effectiveness and lack of variety of choice that is on offer for the average voter. How many times have you heard that no matter who you vote for, the same ‘people’ always get in? Given a choice and clear accessible information, people will vote.
Those who vote do not equate to the demographic breakdown of the country in equivalent percentages, and attracting the non-voter will swing the election. The non-partisan group Operation Black Vote found that in the coming election 168 marginal seats could be decided by the Black and Asian residents of those boroughs***. Age and gender have an effect, with the older and male more likely to vote and to vote Conservative or Liberal Democrat, and the younger and female more likely to vote and to vote Labour^ or Green.
If you are a disabled voter, you are entitled under Electoral Commission rules to the following:
- The right to request assistance to mark the ballot paper – request the assistance of the Presiding Officer to mark the ballot paper for them or bring someone with them to help you (this person must be an immediate family member over 18 years old or a qualified voter).
- The use of a tactile voting device – this is a plastic device that is fixed onto the ballot paper so visually impaired people or those with limited dexterity can mark their ballot paper in secret.
- Large print version of the ballot paper which should be clearly displayed inside the polling station and a copy can be given to voters to take with them into the polling booth to use for reference.
- It is the responsibility of the relevant council to designate polling places within their area and to keep these under review to ensure access is possible for those with mobility issues or in wheelchairs or other mobility device. If a voter is unable to enter the polling station because of physical disability, the Presiding Officer may take the ballot paper to the voter.
Previous non-voters will hold the key to this election^^, and the result may well hinge on the votes of those who are discriminated against within society. According to the Electoral Reform Society (www.electoral-reform.org.uk) there are about 51 million people eligible to vote in the UK. Ethnic minorities, female, transgender/sexual, poor, disabled, non-heterosexual, whether intersectionally more than one of these identities or not, these are the ones in the non-voting 35-40% whose vote could swing the election. These voices will be heard when the count is in. One third of this electorate chooses to disenfranchise itself. Imagine the possibilities if it chose to act.
*Glossary of Terms
Cis = cisgender/cissexual – a person who was correctly assigned their sex/gender at birth.
Hetero = heterosexual – a person who has exclusively romantic/sexual relationships with a person of the opposite sex/gender to themselves.
Normative = that which is assumed collectively by a society to be the average or normal default status of the society.
** http://www.ukpolitical.info/by-election-turnout.htm
^ http://www.britishpollingcouncil.org/pdf/nick-moon.pdf
This is what my brain does when I’m trapped in the fog of depression and anxiety – currently my medication helps keep the darkness at bay, but it encroaches. This is over four years old and still relevant. It may always be, but that’s okay. This too shall pass. It may come back, but it will always pass again.
Don’t Let Me Think
Step away from my world, let everything cease
Stop my brain, I want to get off,
The whirling, swirling, dash of my thoughts
Too fleeting to catch yet too detailed
Too thorough, too symptomatic
Too causal, too deep.
Too scary.
To stop.
Irrational fear of the known and potential,
What I live taken to the furthest point
Of possibility, fragility, without pause
Too hard to pass over with no reaction,
Too likely yet unlikely at the same time.
Probable improbability.
Confused.
Continue.
I reach to catch the snapshots floating by
To bring them in to me and calm them
To tame them and work them into the shape
I can live with, understand, accept
And put aside. I can’t.
Too fast they fly,
Too high to reach.
Torture.
My mind is my enemy for the passing of moments,
At war with myself, but an enemy too strong
At this second. This minute. This day.
But soon it shall pass. All moments
Shall pass and I grow.
In inner strength.
Too much for now.
Not forever.
Don’t let me think, let my mind rest and relax.
Don’t let the pressing of the fears enter in,
Don’t let the swift panic decompress hope
And let it out and away from my Pandora’s box.
Don’t let me think.
Don’t let me see.
Don’t let me.
Don’t let.
Me.
© Tina Price-Johnson
11 March 2015
On Wednesday 2nd October the United Kingdom had our first Black Member of Parliament lead the questions from the opposition bench for Prime Minister’s Questions. A historic moment, more poignant for happening in Black History Month. Hurrah, celebration, break out the party poppers, victory dance!
Those of you who have read my blog before (and the title of this one, I’m not subtle) may realise I am not cheering this event. I’m fuming about it. WHY THE HELL HAS IT TAKEN UNTIL OCTOBER 2019 FOR A BLACK PERSON, OR FOR ANY PERSON OF COLOUR, TO LEAD THE QUESTIONS FOR PMQ?
Official Twitter feed photo.
I am pleased it happened, Dianne Abbott is a superb orator (if anyone points out her speech impediment please remove your ableist arse from my readership right now; listen to what she says not how she says it), a wise and witty woman, and is surprisingly short in real life (I have had the great pleasure of meeting her at a Matchwomen’s Festival a couple of years ago. She was with Shami Chakrabarti. I squee’d a lot).
The theme of this year’s Black History Month is Black Migration. Frankly, black migration is essential to the history of this country in that it fuelled and supported, and still does, the economic viability of this country. We would not be a wealthy country were it not for exploiting the colonies, enslaving the people, utilising the divide-and-conquer system perfected by all empires to ensure wages (if paid) are low and the disenfranchised are too busy fighting each other to punch up instead of sideways or down. The ladder is more slippery the nearer the ground you get and sometimes those punches are all that keeps you falling.
We should not be having ‘firsts’ of this kind in this day and age. The UK has always been a country of migration, in and out, and there have been people of all racial identities, differing cultural backgrounds and defined as BAME in the UK. The history of the UK is one built on migration. It is white privilege and blinkered bias which leads all our social and political institutions into teaching us throughout our life that ‘white is right’ for all things. We are imbued with prejudice from birth, and have to unlearn our biases throughout our lives. It shouldn’t be this way, but it is.
It is incumbent on us all to unpack our privileges, whatever they may be (I’m white, heterosexually identified, cisgender – I have a lot to unpack). To be an ally that is the very least we should do. Being an ally is what every white person MUST do.
That means over-representation in all public documentation, films, TV, books, all mainstream media. That means affirmative action in all jobs, positions of power and authority, political appointments and so on. It means addressing the implicit bias with which we are ingrained.
It means sitting down and shutting up when a person with the lived experience of the bigotry is speaking their truth.
So I am absolutely furious about the fact we have a Black History Month because WE SHOULD NOT NEED IT. But until there is no prejudice, I am glad we do. Maybe in my lifetime, this will change… but I’m not holding my breath.
I was initially diagnosed with CLL (chronic lymphocytic leukaemia) in around May 2014, which means I have now been on what is known as watch & wait, sometimes called active monitoring and also known as watch & worry by most of us living with CLL, for over five years. What this actually means is regular blood tests to see how the leukaemia is progressing, if it is progressing, and whether any other symptoms have arisen. If they have, for example, some mix of the following symptoms; strong night sweats over a period of at least two weeks, repeated infections, swollen lymph glands which stay swollen, enlarged spleen, then treatment may be indicated. I haven’t reached that stage yet, but will eventually.
This helps me survive. Not funny, but true.
If you met me you would think there was absolutely nothing wrong with me. Unless you met me on an aeroplane, in which case you would see this (picture on right). It’s necessary to avoid infection from the recycled air on all flights. I know from experience I get ill, and that was before CLL was diagnosed!
It’s frustrating though; I had people taking the pee out of me when I posted this image on Facebook, which I did to try and pluck up the courage to wear it as I knew that people would react to it. As a result of the comments, I could not wear it for my initial flight and of course got very ill at the other end which nearly spoiled my trip. I wore it on the flight back and was perfectly fine. My lesson was learned, but I doubt the people on the flight did if the comments from friends and family were anything to go by.
It hurt, to read the humour at what I looked like whilst the understanding that it would prevent my possibly needing chemotherapy or other forms of treatment for some time to come was completely lacking. I understand though, that this is due to a lack of knowledge and information about what is the most commonly diagnosed form of blood cancer in the UK.
I help to administrate (and get a lot of support, advice and community from) a CLL Facebook support group for UK patients, and I asked if they could let me know what one thing they would like people to know about CLL. Ages given where mentioned.
Tina, 47 – “I would like muggles (people with no CLL awareness) to know is that the risk of infection is very real and we have to take precautions, so whilst a lot of us may look healthy, we are not and we have to avoid illnesses.” (yes, that’s me, I started it off as I’m a firm believer in if you ask others to do something you should be prepared to do it yourself).
Diane – “I wish they could understand how tired you get, even though you usually look healthy.”
Veronica, 64, W&W 4 years – “Wish doctors etc. would recognise that fatigue is REAL (capitals by Veronica) and often debilitating.”
Jason – “Those that have heard of CLL think it’s a good cancer as they have heard or read something along those lines. I can include my wife in that as the only appointment she attending my dx the doctor told us that and even though a few months later I got told I had bad markers (17p in my case) which complicates things everyone thinks all is ok and I will live forever – not against doctors telling people on dx that it’s a good treatment because that is a good way of breaking bad news but more needs to be put out there that there are many other forms of CLL which are not good.”
Tom – “The fatigue/tiredness thing is a problem and the fact it comes out of the blue and stays for a while is too.”
Louise C – “Tiredness and fatigue, it’s the pits”
Paul – “the effect it has on our loved ones. Those of us living with CLL “feel” the effects, but our loved ones have to cope with the fall out and yet provide us with so much love and support. In a way their challenges are worse (if that is the right word) than those with the condition.”
Wendy, 5 ½ years W&W – “The tiredness for me …, also people saying but you haven’t had treatment. It took me a while myself getting my head around it has to get worse before treatment is offered. It’s the opposite to other cancers.”
Denise, 3 years W&W – “it was the sudden impact of being diagnosed… and the effects on my immediate family. Staying away from infection and getting friends or others to understand is very hard. I also have fibromyalgia and chronic fatigue syndrome so it’s really hard for me to know why I’m so fatigue; could it be the CLL? I’m never sure.”
Mick – “Fatigue.”
Shelley, 52, 2 years W&W (husband also diagnosed, 8 years W&W) -“ People think we don’t or can’t possibly have ‘serious cancer’ because we aren’t rushed into treatment.”
Louise L, 49, 2 years W&W – “It’s the fatigue that’s the biggest thing for me, I had to give up work because of it. And that people keep saying ‘why can’t they just give you chemo’, I get fed up of my own voice explaining it to people.”
Janet – “Fatigue is the worst when you say you’re tired and people think sleep will cure all. I feel as though somebody’s turned the power off … the worst comment ever ‘you don’t look sick’.”
Heather, 56, 1 year W&W – “for the consultants and doctors not say … CLL/SLL IS NOTHING!! Not only its affecting fatigue levels and infection risk but the mental effects on us knowing that cancer is running through the whole of your body can have … already had a breast cancer diagnosis 3 months after [diagnosis with CLL] and fear another type coming at any point!”
Jean – “the fact that after treatment everyone assumes you are cured which isn’t the case, we still have to be monitored and have to still live with watch and wait as before treatment.”
Mike – “I have had one or two quite negative responses. One person even started asking questions that seemed to be bordering on “I don’t believe you really have cancer.” Oh, and there’s the “at least it’s not serious cancer”. For now, I no longer mention it to anybody.”
Jillian – “for the 4 years I was on W&W I never actually felt sick, potentially a bit more tired than I should have been. To some extent I felt like a fraud. It was only in the last week or so before my treatment that I really felt pain and tiredness, and then I succumbed to a rotten cold that delayed my treatment. I consider myself really fortunate to have had such a positive experience.”
Phil – “The fatigue. Then helpful idiots saying ‘you should have gone to bed earlier’. If I went to bed much earlier I’d still be at work!”
Lynne, 12 years W&W – “the fatigue, and catching cold after cold.”
Louise K, 53, 4 years W&W “when people tell me I have a lucky cancer (is there such a thing?)”
Kenneth – “the mood swings and pain.”
Gillian – “when people say you look so well.”
Bernie – “people saying “you look well” when you just want to crawl into your bed and sleep forever.”
Elizabeth – “if I had a pound for every time I heard [you look well]!!! I find it so annoying and all I can think of to say is “appearances can be deceiving”!!! How can people judge how you feel when they’re not in our shoes?”
Joann – “I would like the muggles, doctors and specialists to recognise and raise factual evidence that even people on W&W have real debilitating symptoms for example fatigue, night/day sweats and joint aches to name a few, and for them to realise that this condition affects people’s everyday life. People in this group have a real struggle when it comes to things like claiming for PIP or free prescriptions when in my opinion it should not be questioned; this illness is real and should be treated accordingly … even professionals think that if you look okay then you are when you’re really not.”
Mary – “my initial issue was to be informed you have CLL and then told that your first consultant appointment will be in four months’ time.”
Terry, 12 years W&W – “I feel like a fraud because I am not sick enough to receive treatment but still feel the effects of CLL every day. I cannot commit to things because of the fatigue, it feels like someone has pulled the plug out. I work when I can but it can knock me out for days. Sometimes I feel like I am living half a life because of the amount of time I have to rest, it is so frustrating.”
Diane – “For doctors and consultants at hospital to actually be aware of and recognise what the main symptoms are, never mind the list of other things it does to your body. And to recognise how difficult and frustrating life becomes for those with CLL but also difficult for the partner/relative etc. watching the one they love being robbed of aspects of their life, things that were ‘normal’ before but now so different.”
Mark – “I have had cancer twice and on balance dealing with CLL is somewhat harder because being treated the first time was done within 9 months of diagnosis with just the follow-up appointments afterwards. [with] CLL many of us wait of years before treatment commences and that in itself is mentally wearing which only adds to the fatigue and people forget your life-threatening condition.
I also think there is one other point to consider and that is the loneliness of the disease. Coping with feelings which can crop up at any stage and for those of us with nobody to share our woes relating to the disease, and indeed attempting to begin a new relationship with someone and you have to tell them about your unwanted passenger. In truth, I feel like a leper at times and I can’t do a thing about it.”
Lisa – “You look really well so you can’t be sick so it can’t be serious.”
As you can see, it’s not just muggles but also medical professionals who have a lack of awareness of CLL. We are at a higher risk of developing other cancers such as melanoma (skin cancer) or breast cancer. GPs will often have minimal or no understanding of the implications and experiences to be expected with CLL. We have to be our own advocates and push for what we know is best practice such as annual flu vaccines, five-yearly pneumonia vaccines, priority patient status for immediate GP appointments if we have an infection as we can develop sepsis incredibly quickly, and so on. There is no mental health support offered or available for the majority of us. Treatment and monitoring even in watch and wait varies enormously according to patient experience and geographic location. It shouldn’t.
Please share this blog. Please let people know about CLL and blood cancers, and please be patient and understanding with people, no matter who they are, as you never know what they are dealing with.
For Blood Cancer Awareness Month, September 2019.
#BloodCancerAwarenessMonth
#CLL
I was recently involved in a surprisingly heated (not on my part, I hasten to add, virtuous paragon of non-excitableness that I am) discussion with regard to a friend who setting up a new business (https://purplecoqui.com/ – I so want to go!) arranging bespoke tours of Puerto Rico, and she states on her website that themed tours (guided or unguided) can be arranged to be fully accessible.
Umbrage was taken by a non-disabled person with regard to use of the term “accessible” because it did not state “wheelchair accessible” but did use the word “disabled”; this was taken to be offensive by said commenter.
My friend had surveyed many people with disabilities before this word was chosen, from people with disabilities, and this term was not deemed offensive by them (I include myself in the ‘them’). Much discussion ensued (by which I mean one-sided, not-listened-to, not-heard commentary from said umbrage-taker) as to the terms, and it was impossible to get UT to understand disabled does not mean wheelchair user.
This made me wonder; how many people assume that disabled access means wheelchair access? Far too many if my and others experiences of living with disabilities are taken into account.
For example, on the London Underground the accessible lifts are generally placed a long way from each other, necessitating long walks to access them. Fine if you are in a wheelchair and have sufficient energy and do not have chronic pain, and are comfortable getting to them. Rubbish for everyone else.
Another example; I attended a show at the O2 in Greenwich, London, for which we used the disabled parking. Disappointingly these parking spaces are at least ½ mile (600 metres-ish, I’m estimating) from the entrance to the complex. I have chronic pain mobility issues and use a walking stick. I struggle to walk distances. By the time I reached the complex I was very angry, in a lot of pain and almost in tears. Yet this is considered to be a decent provision of accessibility for disabled people.
Disability not discriminate; people do.
The problem is that it is assumed by a huge amount of society including those who are architects of society (in every sense of the word) that accessibility means wheelchair accessible. As a result, when accessing booking for tours, holidays, buildings, public and private transport, anywhere really, the assumption is in order to make something accessible you need to make it accessible to wheelchairs. Yes, you do, and everything should automatically be created to be wheelchair accessible, but that is not the only accessibility that is required.
Those with chronic pain need short distances or some form of transport to get between long distances. Moving walkways such as at airports are fantastic. On my recent trip to NZ (I know, I’m a lucky gal) I found a fully accessible glow-worm cave tour but as you can see, this still says wheelchair accessible. Happily, they have thought of other problems and provide regular stations where people can sit and rest, and extra wheelchairs for anyone who has mobility problems during the tour. I was incredibly impressed by the tour, yet did mention how the wording did not help those of us who have disabilities but do not use wheelchairs.
Accessible is a catch-all term which all too frequently excludes the myriad forms of disability that don’t require wheelchairs.
To be truly accessible, the myriad effects disabilities can have on individuals need to be taken into account. This does not mean a list of all the possible disabilities that might exist, this means clarifying the accessibility issues that might cause problems to people with myriad forms of disability. Chronic pain can have many causes, as can mobility problems, but the effect is the same and therefore the solution would also be the same.
Similarly people with sight or hearing problems can be on a sliding scale and/or caused by many different problems, but in order to make somewhere accessible it is the sight/hearing difficulty that causes the problem that needs to be addressed, not the underlying cause of the sight problem.
So how should accessibility be defined? I have a few suggestions:
- By not assuming wheelchair accessible is all that is needed, and by building in total accessibility for all manner of symptoms at the start of any project.
- By contacting disability activists and groups run by those who experience the symptoms for comment and advice at the inception of projects.
- By policy that ensures all projects should be fully accessible at inception.
- By changing social attitudes towards those with disabilities.
We are all (hopefully) going to get old. We are all going to develop problems with accessibility in some form or another. Address the issues now, don’t play catch-up, it’s too easy then to blame costs for denying those of us with disabilities the possibility of participating in society to the best of our capabilities and potential.
I have written before about how people with disabilities are disabled by society not being accessible. This can only be addressed by focusing on the actual problems causing accessibility issues. The definition which has been adopted by the dominant able-bodied society needs to be changed, otherwise millions are still going to be disenfranchised, because they don’t have the right sort of problem.
For further reading on disability issues (activism and experience), try these blogs:
https://spoonshortagesue.wordpress.com/
http://www.francescamartinez.com/en/d1/Enter-Site-
Boris “Bloody” Johnson is now officially (well, as of Wednesday) the UK Prime Minister, elected by 92,000+ of the eligible voters who are members of the Conservative Party. 87% of the eligible voters voted, he beat his nearest rival by nearly double the amount of votes available.
What does this say about us?
Well, it says that we are perfectly content for a proven sexist, racist, xenophobic, homophobic, Islamophobic, fake-buffoon (he is not an idiot and it would be foolish of us to think he is) Bullingdon Boys Club, Old Etonian WMP*-poster boy to be the leader of this country. He has put UK residents in active danger with his ‘quips’, his period as Foreign Secretary was appallingly racist and full of ill-judged comments, and he has been sacked more times from newspaper publications for lying and ineptitude than anyone who was not an old boy would ever be allowed.
None of this was a surprise. All of this was well known before he even stood as potential leader of the UK.
He will get on well with Donald Trump, the disaster that is leading the United States of America. We need to keep a closer eye on the NHS than we ever have before. He is not above further privatising by outsourcing and deliberate underfunding to decimate what we already have.
He may be Prime Minister, but not in my name.
What can we do? Nothing more than continue to fight the bigotry he and his ilk allow to suppurate throughout our society. Strive always to be a good ally to those who are not of our particularly identities, and fight for the rights of everyone in the country. It is no coincidence that since austerity measures have been brought in, and with it the furthering of divide-and-conquer capitalist activity, bigoted attacks have increased. Thoughts and prayers are not going to save us. Continued proactivity in whatever way you can is the only thing we all can do. Find out what your MP actually does, and how they vote, and hold them to account.
I will be observing a short period of mourning, as I am finding my mental health badly affected by the knowledge that there are people who really do think oppression of the people by arbitrary category is a good idea for government. I try to think the best of people, but it’s hard when this happens.
I’m thinking of fluffy kittens and rainbows, and this too shall pass.
Boris “Bloody” Johnson. Really? He is actually the worst of the two options, but that’s just asking if arsenic or cyanide is your preferred after dinner drink.
But Boris “Bloody” Johnson… Not in my name.
Party official websites:
Alliance Party of Northern Ireland (Northern Ireland https://allianceparty.org/)
Conservative Party (Tories https://www.conservatives.com/)
Democratic Unionist Party (Northern Ireland http://www.mydup.com/)
Green Party (England and Wales https://www.greenparty.org.uk/)
Labour Party (http://www.labour.org.uk/index.php/home/)
Liberal Democrat Party (http://www.libdems.org.uk/)
Plaid Cymru (Wales http://www2.plaid.cymru/)
Scottish Green Party (https://greens.scot/)
Scottish National Party (https://www.snp.org/)
Sinn Féin (Northern Ireland http://www.sinnfein.ie/)
Social Democrat & Labour Party (Northern Ireland http://www.sdlp.ie/)
UK Independence Party (UKIP http://www.ukip.org/)
Ulster Unionist Party (Northern Ireland http://www.uup.org/)
*White Male Privilege
I’m Sorry I Couldn’t Save You
I had a dream about you last night.
I dreamt of your face.
Gazing up at me.
Sweet smile and beautiful eyes.
Smiling up at me.
And I couldn’t save you.
I dreamed I tried so hard.
I asked you to come with me.
But you wouldn’t come.
Trusting face and open heart.
I couldn’t persuade you.
And I couldn’t save you.
I knew it would not be safe for you.
I knew you would succumb.
So loving but so tortured.
Heart so flayed and clean.
Torn by your youth and truth.
You thought you’d disappointed.
And I couldn’t save you.
I pulled you up to move you with me.
But you stayed and laughed.
Preferring to disappear inside.
I loved you and couldn’t stop you.
You chose the needle oblivion.
My friend who couldn’t love himself.
And I couldn’t save you.
I’m sorry I couldn’t save you.
I dreamed of you and tried.
But you could not step outside your pain.
I dreamed of you and cried.
Your pain overruled everyone.
Your pain hid love from your soul.
And I couldn’t save you.
© Tina Price-Johnson
28.01.2016
Written in memory of a friend who passed long ago, and whom I think about often. Addiction is a symptom, the cause of which is varied, but as long as causes are not addressed, the disease will prosper. In memory of NP.
I have told both my beloved readers before about the joy of being a member of Rushey Green Timebank, and I can scarcely believe I have been an active member for 8 years now! I offer my Wills and Probate expertise at our Bring & Fix’s and have been on the receiving end of fantastic gardening assistance and mending and adjustment of clothing from other members. We swap hours of help with each other, it’s fabulous!
Well, it’s also about building community and a huge part of that is getting together with people of similar interests. For me, that has meant the creative group. We have held a few poetry/prose/music nights with choirs, readings, and artwork displayed for all members to enjoy and hopefully be inspired by.
Last night was a creative collaboration evening, sprung from the febrile fertile minds of those of us who attend the creative group (mostly writing but it is hoped musical RGTB members may arrange their own group at some point). Exercises were chosen by our member Pete, who organised the gathering, but we can all organise get-togethers for interested parties. The Timebank is there to support.
My goodness, it was enthusing and it was fun! Five of us attended and exercises were given to stimulate our minds into working together to create a unique piece. I also learnt what an Acrostic Poem is (one which forms a word with the starting letter of each line, going downwards). I turned up at the meeting suffering badly with chronic fatigue, and left just as tired but with a mind filled with inspiration. I’m ready for our performance event on 10th August 2019 – come along if you can.
If there is a Timebank near you (have a google) then I strongly advise you to join. It builds community like nothing else I’ve come across. I have been involved since April 2011 and have yet to find a downside!
For the interested, here is what was created last night, in just 90 minutes:
A STORY FROM GIVEN WORDS – Axe, hammer, a length of rope
By Hanneke, Michael & Tina
The shopkeeper looked up at the sound of whistling to see the customer walking towards them, with an exaggerated air of nonchalance. They started to browse the shelves and the shopkeeper watched carefully. The customer pulled out different types of rope, pulling and testing the tension, finally selecting a robust one.
“I’ll have 6 metres of this,” the customer said.
The customer then ran their fingers down the edge of various axes, selecting a large double-headed one. Finally the customer hefted several types of hammer, pounding them against the palm of their hand until they found one sufficient to their purpose. The customer took their items to the counter.
“Got everything you need?” the shopkeeper asked.
The customer smiled. “I think so.”
“Big project planned?”
The customer smiled again, knowing there was no reason to say what they might be intending to do with their items.
“How much weight do you think this rope can take?” the customer asked.
“Depends what you want to do with it,” the shopkeeper answered.
“I’m about 12 stone. Do you think it would take my weight?”
“Ummm… Should do,” the shopkeeper answered.
“So it would take your weight then?”
“Yes, should do.”
“And the axe, sharp enough to cut through anything?”
“…yes” the shopkeeper answered nervously.
“This hammer seems pretty lethal too, right?” the customer laughed to themselves.
“Err… that’ll be £50 all in”.
“Here you go, cheers mate.” The customer went to pull out a card, shook their head, then pulled out some notes instead.
The shopkeeper put the items in a bag, hoping their hands didn’t shake too much with the nerves that ran through their body. They passed the bag over, saying “hope the project goes well.”
The customer walked out the door, pausing to turn around and say “I hope my kids like their new treehouse, the swing should be a real laugh!”
By Julie & Pete
He walked into the shop carefully looking out for security cameras. He pretended to browse but he knew the items he wanted to buy. Carefully chosen, he paid using cash, as he would not be identified.
He felt euphoric, he had been planning this for months and now it was about to happen.
He left the store, carrying his bag of items. His car was parked around the corner, again avoiding CCTV cameras. He stopped briefly at the boot, contemplating whether to open it but decided the risk of exposing the cargo within was too great.
A couple of hours later he was at his destination, a wood with a broken down shed amongst the trees. He pulled the body out and hung it from the rafters. Then he chopped the wood up and hammered the door shut.
His wife had told him to get rid of the blow-up doll, but he knew he would come back later for his pleasure. But then he realized; he’d forgotten to buy a pump and the shop was now closed!
ACROSTIC POEM – from the word “together”
By Julie & Pete
Time passes by so swiftly
One hour seems like a second
Gone like an old memory
Each moment spent in the company of others
Ties the bonds between them
Heavy is the heart that stands alone
Ever to try and clutch at the invisible threads
Running through the fabric of life
By Hanneke, Michael & Tina
To find another in a lonely hour
Or to lose oneself in the dark of the winter soul
Gold for Arsenal!
Everybody cheers
Team wins and we shout our joy to deafen ourselves
Help is on the way
Enough to keep us going
Resting quietly alone until we join up again for the next fixture
PICK A WORD FROM A HAT, ONE FOR EACH GROUP MEMBER
By Hanneke, Pete & Tina
Words picked: Alphabet, Petrichor, Saxophone
Open plains; a house is on the horizon with a porch. It has not rained for weeks, in the middle of summer.
The people were desperate to quench their thirst, to water their crops, and they called on the music man to save them.
The music man had spent several years learning to play Josie, his beloved saxophone.
He was known for calling in the crowds with Josie, maybe now she could call in the rain?
He stilled himself, centring his focus until all that existed was Josie and the sounds they could, they would, create together, and he kissed the mouthpiece with reverence, then blew.
Josie sounded beautiful as always and the music man started running through the alphabet of notes as he fingered the keys.
On a long G major clouds broke in the sky and it began to rain heavily; the music man and Josie left the porch and walked into the open as the earth shared its revelation.
Thick drops fell to the ground and the dust rose up to meet it, thudding life back into the earth and renewing all who bathed in nature’s shower.
The music man revelled in the rain but realised Josie would not like it. He stopped playing and placed Josie back in her case. As soon as he did, the rain stopped and left petrichor in the air.
